Friends

As my condition has progressed and I can no longer walk, work or drive, I have seen my world become very small. I didn’t happen over night, but it did happen.Activities become limited. Friends begin to drift away. Fatigue takes hold. Opportunities for friendships, old and new become more difficult.

I belonged to a book club for 14 years. We would meet at a different member’s home each month. The hostess choose the book and had the choice of dinner at a restaurant before the meeting or a potluck at her house. For several years I was the club secretary and co-ordinated the calendar. This was easily done, even after I stopped working because it was all done via email on my home computer.

Getting to the meetings began to become an issue when I could no longer drive.
My friends offered to pick me up and for a while (when I was still able to use a walker) this worked out ok. Even so I remember one meeting where we were having a pot luck dinner at someone’s home. I had come in and found myself a place on the sofa in the family room to sit and folded the walker next to me. As the other women came in they all gathered around the kitchen island, drinking wine and filing their plates. One or two waved or acknowledged me, but I began to feel very isolated. Eventually one person came over and asked if I wanted her to bring me a plate and what would I like to drink. I accepted her gracious offer. Over the course of my eating dinner two women did come over to sit and talk with me for a few minutes but I still felt I was on the fringe of the group.

Then they decided to move into a different room for the discussion, so I got my walker and went along. The discussion was good, but it was at that moment that I first felt like an outsider.

Later on, as I became more dependent on my wheelchair for mobility I found it even more difficult to attend regular meetings. I needed my van with the lift to carry my wheelchair. My husband said he would drive me and pick me up.
Problem was many of the homes had stairs or steps or landings at the entrance and getting my chair in and out was going to be a problem. Not to mention the bathrooms! My chair does not fit into most guest bathrooms. Although I have grab bars and an ADA height approved toilet seat at home, other homes don’t have this, so this became my second problem.

Last December I hosted the holiday party/book club. I announced ahead of time that it would be my last meeting and that I felt it was time for me to back off. I was also having a problem holding the books and turning the pages as my condition was now affecting my hands and arms. I passed the administration duties on to someone else. I felt it was the end of an era.

At the end of meeting, someone handed me a card signed by the group.
I thought it was just a nice gesture until I realized that it held a $200 gift card to Amazon.com so that I could buy a Kindle e reader to continue to read and enjoy many books. I began to cry. Everyone told me how much they would miss me and how much I had meant to the club. I had no idea. Many people told me to call if there was ever anything I needed done, needed picked up or ever needed a ride. What a wonderful group of friends. A few of the women have remained in contact and even
picked up lunch and come over to my house to spend some time with me.

I have not attended a meeting for 5 months. June’s meeting hostess lives a mile from my home. She asked me if I would like to hold the meeting here (she would do all the work) so that I could attend in the comfort of my own home.

It just doesn’t get any better than that. I said Yes!

Getting around

The Good

I live in Tempe, AZ, a lovely well kept, relatively new suburb of Phoenix. Two years ago, when I determined that it was no longer safe for me to drive, I began to look for other options of getting around without always having to depend on my husband, Phil to drive me.

First obstacle.. Getting out of the house. Ok, not a big problem. Phil made ramps for the front and back door so I could take my Jazzy Power Chair out of the house.
That was the easy part. I got down my driveway to find that all of the sidewalks in our neighborhood did not have the usual 45 degree curbs with ramp cut outs at the driveway. Instead they had what is call rolled curbs. How best to describe this?
The curbs are all sloped with no difference between the curb and the driveway. The angle is pretty steep and when I tried to get from the sidewalk to the street, and back, I would loose my balance and almost tipped my chair on several occasions.
If I were going to be independent I would have to find a better way.

I did some searching on line, called the city, got referred to several departments before finally finding the right office. I explained my situation and the gentlemen knew immediately what I needed.... cut out ramps. YES! He said they had done that for another women a few months ago and he would look into it. His answer came back the next day that the people who do that are backed up and it could take 6 months or more. :-(

Then he surprised me... off the record, he suggested that I send an email to the Mayor of Tempe and the City Council explaining my situation. It was a matter of Health and Safety for me. I did that.

That day I had 4 replies saying that they would looking into the matter.
The NEXT day I got an email from the person in charge of this type of work saying that the were holding a special meeting and that The Supervisor of Minor Cement (really) would be at my home to look over the situation and that they may be able to get it done in perhaps 2 weeks. I was also told at that time that the ramp could not be put in front of my house, only at the corner. This was fine with me since I am only one house away from the corner.


Sure enough Jim (supervisor of Minor Cement) showed up the next day and asked what I needed. He asked if I wanted a ramp in front of my house (??) I said I was told that could not happen. He smiled and said HE was the supervisor and he could put the ramp wherever he needed it. He also said he would put one across the street, one on the opposite corner and 2 up the road so that I could have access from my house to the main road where I could pick up the bus. This was a Thursday, he said they would be there on the next Tuesday to start work. They were there at 7 am on Monday, put in a total of 5 ramps and were finished and gone by 2 pm.

It is all a matter of getting to the right person. Don’t give up!


Getting Around

The Bad

I have a Jazzy Power Chair purchased for me through Medicare. This is the only way I can get around. My arms are too weak to push a manual chair and I cannot walk. Beware. Medicare guidelines are very specific. You need to prove that you need the chair for “Activities of Daily Living” (ADL). This means getting around your home. Not taking out the trash, not walking the dog , and certainly not going to a movie or to visit a friend, not even going to the doctor. It means that the chair is a medical necessity to getting around your home, period. A friend of mine was turned down because she made the mistake of telling her doctor she uses the chair to take out her trash and walk her dog. Be careful what you say to your doctor and if possible, have the paperwork done by your specialist, not your PCP, he /she will be more aware of the Insurance/Medicare requirements.
Good Luck.



Getting Around

The Ugly

So now you have your chair or scooter. If you ever plan to get out of the house, you will need a van with some kind of lift or ramp to transport the chair.
This is NOT a medical necessity and will NOT be covered by your insurance or Medicare. But first, you will need a ramp to get out of your front door.. also not a medical necessity so not covered by Insurance... are you getting the drift here.
( that is why my husband built them for me). So apparently the thinking goes, you are disabled and therefore not entitled to lead a full or productive life outside the home.

This of course is nonsense, but that is how it works. In some areas you can use the bus or mass transportation. In more rural areas this may not be a possibility.
In Tempe, they do have a “Dial a ride” with a wheelchair lift, that, if you qualify, will pick you up and take you to appointments ...or even (whisper) to the Mall! They are not always as reliable as you would hope so you must allow extra time and be patient, but it is a way to get around.

We purchased a 1999 mini van ($23,000) and a used lift ($2500) and so far it has served me well.

The Good, The Bad, and The Ugly

I live in Tempe, AZ. The East Valley, as it is called. East of Phoenix that is.It is one of the relatively newer parts of town so you would think that accessibility would not be an issue. The ADA laws etc. You’d be wrong. While muchof the area is accessible do not take this for granted.

The Good:

Tempe is a very user friendly town for a person in a wheelchair. I was surprised to learn that with my handicap auto plates (or a placard) you can park for FREE at any garage in Tempe or at any sidewalk parking, even if it has a meter! They do not seem to spread this news around, but I was given this information by a parking attendant, and over the years have found it to be true. So go to Tempe, park anywhere and enjoy yourself.

The Bad:

Although I live in Tempe the closest major Shopping Mall is in Chandler, about5 miles from my home, at Chandler Blvd and the 101 Freeway. Of course, they have handicap parking, and a cut out ramp to get up to the sidewalk. Getting INTO the stores is a different story.

I usually park near Macy’s since that is my favorite store and there are any H/C parking places. For years, I was amazed to find that I could get up to the doors that led into the store only to find that there was no automatic door opener. I would have to sit and wait for some good Samaritan to come by and open the door.. doors (there is a set of double doors to enter) for me. Some people are very nice and when they see me, open the doors and allow me to enter. Others rush up to the door, enter themselves and almost slam the door in my face. Hey! Am I invisible..? What don’t they understand?

The funny part here is that on the OUTSIDE of the door there is wheelchair symbol you know the one, blue caricature of a wheelchair on a square box. Next to it there is a sign that says (I’m not kidding here)... " We are wheelchair friendly, if you need any assistance please ask a salesperson for help. Hello? I am on the OUTSIDE of the store, HOW and WHO am I going to ask for help?

I brought this information to several sales people’s attention, to the store manager and to the Corporate office, more than once I should say. I was told they understood, were sorry for the inconvenience and would look into it.

This went on for several years.

I finally found that if I park in front of Nordstrom, on the other side of the mall, a store I cannot afford to shop at, I can get into the store via an automatic button...one set of doors, large foyer area. Elevators are large with room enough to turn my wheelchair around and not have to back in and out. Sales people come running from each end of the store to see if I need anything. Large, clean accessible restrooms.

One nice salesperson set me up in a wheelchair accessible dressing room, asked me what I was looking for, size and color, and brought me several items to try on, then came back again and again to see how I was doing and bring me more items. I love Nordstrom, too bad I can’t afford to shop there.

Oh, by the way, Macy’s finally did put door openers on there entrances.

　

The Ugly:

Schnepf’s Farm Peach Festival, Queen Creek, AZ

It was a lovely cooler than normal day in May and so we decided to get out of the house and attend the annual Peach Festival held at Schnepfs farm in Queen Creek, AZ about 45 minutes from our home. Their website said the grounds and facility were wheelchair accessible. Don’t you believe it!

We got there and attempted to park my van. All the parking was in a dirt lot. We were surprised to see an area supposedly portioned off for handicap parking. However, when we tried to find a spot to park we found that there were no real ‘parking spaces,’ people were parked any which way, front end in, double parked, parallel parked etc. Once in the handicap parking area it was almost impossible to turn the van around to get out and look elsewhere for parking. There was no attendant or anyone to help or give guidance. We finally parked under a tree in what I doubt was a designated ‘spot’, near the entrance.

Lucky for me, my wheelchair lift comes out the back, not the side of the van or there would have been no way to get my chair out of the van. There was no room for my husband to bring the chair to the passenger side door for me, so he had to help me ‘walk’ over uneven rocky dirt ground to get to my chair.

Once in the Festival area it was more dirt trails. I wanted the much advertised Peach Pie which I was told was being sold in the store. The store was small and crowded and very difficult to maneuver my chair. I really wanted that pie, so I managed to get in and to the back of the store only to find they were out of pie and would not have any more that day.

Next I tried for the Peach Ice Cream which I was told was being sold at the opposite end of the grounds. I bumped along the dirt and grass but there was no ice cream to be found. I finally found someone wearing an official tee shirt and asked where the ice cream was. I was told the machine was broken but if I waited ½ hour they were bringing some out in a cooler. I waited, in the sun, but no ice cream ever arrived.

By this time I had to use the bathroom. Yes they had a so called handicap toilet stall. But it was narrow and could barely fit my chair. I certainly could not turn around in it. If I had been in a scooter instead of my power chair I could not have used it.

When I mentioned all of this to one of the owners, her reply was "the festival is free, we are doing the best we can", then she walked away.

My advice is skip the Peach Festival and go to The Tempe Arts Festival held twice a year in down town Tempe... April and December. Accessible free parking, lots of fun, music and food. It too is Free.

Love the frozen chocolate covered bananas.!

Bonnie's Blog

Life... who knew? Life is not always, and indeed is seldom, what we thought it was going to be. Had anyone told me when I was 25 that at age 43 I would be diagnosed with a rare neuro-muscular disease and that by age 58 it would leave me in a wheelchair unable to walk, drive or work, I would have laughed at the possibility. It was not in my plan. Yet here I am in just that situation. I have a progressive disease. There is no cure, there is no treatment. I can’t walk, I can’t drive, I can’t work.

Yet, I can think, talk. I can feel (and I don’t FEEL any different) and I still want to live my life.

I am lucky. I have a wonderful husband who, after a short adjustment period, has become my full time care giver. He will take me (and my chair) anywhere I want to go. He takes me to the hair salon, grocery shopping, the mall and the Peach Festival. We go to the AZ State Fair, the Tempe Arts Festival and the Phoenix Theater where we enjoy live stage productions.

Yes there is an American’s with Disabilities Act (ADA) that would seem to say that all these places have to be wheelchair accessible. This is not always the case.

In this blog I am going to talk about my experiences getting around Arizona in a Wheelchair. From the Malls, to the Fairs, to the Grocery stores and shops, to the tourist attractions, the Zoo, the Library. I will talk about my experiences, the good, the bad, and the ugly. By doing this I hope it will help others be more informed and perhaps encourage some of these establishments to widen their idea of what is accessible and what is not.

I am not a disabled person. I am a PERSON, with a disabilty.